I’ve been a registered nurse for 45 years and am now a Hospice Nurse. My father was an extraordinary person who had a law degree but never used it, instead working for Norfolk and Western Railroad until he retired. He was incredibly smart and extremely well read. He gardened, loved ecology, the opera, and he was so handsome people on the street would just stop and stare at him. Above all he loved to golf, often playing 36 holes a day. In the early 1980s he was diagnosed as a diabetic and was living in Arizona. He wounded his foot and didn’t remember injuring himself. It became a fulminating infection. After 5 years of dealing with this, he had it amputated and was delighted to be pain-free. He was saddened that it ruined his golf game. Shortly after he began to have shortness of breath, and in 1989 fell into a diabetic coma but was back on the golf course 8 weeks later. He began to have problems with breathlessness and was diagnosed with cardiomyothopy, a condition where the heart muscle is abnormal, leading to problems pumping blood. He had two trips to the hospital after that, and then a third time went in for pulmonary edema. My mother, who was also a registered nurse, called me, and I said, “I’m coming.” I arrived on a Sunday night in February 1990. My father was lucid until the very end. He had hand-written his DNR instructions and they were on the front of his hospital chart. Because he was on the cardiac floor, his heart was being monitored and I went home only to learn that over the night he’d gone into VTach, where his heartbeat was very fast, and the hospital had treated him for it. When I got there the next day he was really angry. I told him, “you can refuse the medications they are giving you for your heart.” And that’s what we did. I sat with him for 5 days, asking each time what medications they were giving him and he refused the heart meds each time. It was a Catholic hospital; no one sent us a social worker or came to talk to us, or suggest that he go home to die in peace. We didn’t think that we had a choice to leave the hospital. It should have been about his quality of life. He had often said “if I can’t play golf, I’m not staying.” He was matter-of-fact and stoic throughout this time and we prevented the nurses from resuscitating him as he wished. Back then I still trusted doctors. He was given 1 milligram of morphine for comfort but I now know that 10 mg would have helped him more and that is an acceptable dosage during the last stages.

Unfortunately nurses have seconds to react and if they aren’t familiar with end-of-life instructions, they can make the wrong decision. It’s very complicated. Everyone in the room has to be on the same page, the whole family. As a hospice nurse I’ve seen many tough situations. I have had family members revoke hospice and insist on their family member being tube fed, even though it was against the person’s wishes. I recently had an experience as a hospice nurse that was sad and preventable. I was with the family during the last hours. The patient was in renal failure from cancer and passed away while I was there. I pronounced her death and began talking to the family about funeral arrangements while I prepared her body. All of a sudden, an ambulance shows up and EMTs enter the home, and I explain that I am the hospice nurse, that I am in charge of the patient and that I have pronounced her death. The EMTs left, but now I had to determine who called them, and I discovered that it was the woman’s young son, who had felt that no one was helping his mom during this crisis. No one in the family had taken the time to explain to this child what was happening. What people need to understand is that not doing something is doing something. Not feeding your loved one is doing something that will help them. A recent hospital study showed that force feeding people at the end of their life increases discomfort; it doesn’t provide comfort.

Because of my many experiences both with my father and in my years as a nurse, I do have an Advanced Care Directive and my family knows exactly what I would want in these circumstances.